My goal with this blog is to tell the whole story. Each child's story with JIA is different and SJIA is even more different. I tell my husband that Arthritis should not be the name for this, just a symptom.
My daughter has been taking prednisone, a steroid, to control the inflammation, and I hate it. Yesterday when she woke up I could see the puffiness in her face had increased dramatically and then there was the grumpiness. I am reminded of the book Alexander and the Terrible, Horrible, No Good Very Bad Day. Only in this version I watch it play out in my daughter's life and I have no idea how to help.
My husband and I talk to her about how the medicine can make her feel angry, but that doesn't make it ok to kick and scream and throw and all out fit. In the hospital I came up with the phrase, super tantrum, because that is what they are. Can you imagine your child screaming for you to go away, for everyone to just leave her alone for four hours? It is a horrible experience.
We use a sticker chart and reward system now that we are home. With nine stickers she can earn a trip to the History Museum, Science Museum, time to color some hard boiled eggs (a favorite activity) or an ice cream from the ice cream truck. She has options to save up and get other stuff like mail-order lady bugs (yes they have them), but she loves to spend her stickers as soon as she saves them up. Right now she can earn up to three a day one for no tantrum in 24 hours, one for holding still during her injection (she gets it no matter what because sitting for a painful injection is hard for anyone let alone a five year old) and then if she does some excersises she can earn one more.
This is a nasty disease.
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